RE: We are desperate - Has anyone else had a baby with a trach?

[Guest guest]

I can imagine how frantic U are. Di had a trach and g-tube for years. I'm

going to say everything that crossed my mind back then, so pls don't take

anything personally. Sometimes we have to do and say things we don't want to, to

get the necessary result for our child.

Did U make the argument with the insurance company that it is cheaper to

have Ben at home than in a medical facility? They may back down if U readmit

him. (i mean this only as a test-I know U don't want that)

Are there any laws in Ohio that prevent the ins company from terminating

life support? That's what the trach and g-tube are-and they are no good if not

monitored.

Has the hospital outpatient dept. tried to help?-We had agencies prepared to

make the argument that would have to be readmitted to a hospital or

rehab without nursing.

Is his vision compromised enough to have him declared " legally blind " ? That

might open up new avenues,and get U more advocacy.

Can U get Ur local dept. of mental health involved-because the children are

understood to be developmentally delayed, they put on with no questions

asked. And then they can advocate for U. Also, that might qualify U for

Medicare (aid) for Ben, and that would get Ur nursing.

My husband and I separated when Di. was 10. Then my only income was child

support, and that met the guidelines for medicare/medicaid. We just proved

separate residences-we still aren't legally separated or divorced. But I had

thought about separating when she was a baby, in order to maintain insurance

and services for .

Its a viscous thing businesses do to families, when you're coping with all U

can to begin with.

Of course, U could try a disability lawyer. Or try to pick up a supplemental

insurance policy (expensive, I know). If U don't have U'r states Dept of

health & human services, commission for the blind, the mental health, and

multi-handicapped agencies on Ben's case, they need to be. Then there are the

politicians.they actually do help from time to time. Ur family may know some of

the local and state reps.Thats everything I can think of...I'll say a prayer.

[Guest guest]

Amy,

I forget to mention Easter Seals, March of Dimes, the United Way, St.

Jude's,

Perhaps they can help in some way.

Peace,

[Guest guest]

Amy -

Oh... I think I sighed about ten times as I read your post. I do

understand... but I don't think I have much to add. You have been given some

great

suggestions already by others on the list... I am afraid that since I don't know

how the system works in your state, any advice I have wouldn't necessarily

apply.

I think that the more you squawk about it, the more chances you'll have that

someone will listen.

In California, my daughter has qualified for the waiver for Medical - - this

means that regardless of our assets or income, she qualifies based upon her

diagnosis... not CHARGE Syndrome, but the different medical diagnoses she has as

a result of CHARGE. It was my understanding that this criteria was the same

in each state, but it sounds like (from your post) that this isn't true.

Gracie is trached, too... and needs 24 hour care. We are lucky enough to

have insurance that covers the medical need for 16 hours a day of nursing.

However, there is such a shortage of nursing, we've not been regularly staffed

at

night for 6 months. I don't say this to scare you or be negative - - it's just

a very unfortunate fact. If our insurance didn't pay for the nursing, then

Medi-cal would based upon the need... also 16 hours a day. However, the issue

with nursing shortage still applies.

Another option that exists is called (in California) In Home Support

Services. Most people don't know it exists and only find out about it through

other

parents, as it is mostly used for the elderly. But for kids like ours, it is

an option... it is a state program run by the counties and allows for payment

for care based upon time per task criteria. I think that a lot of states have

programs like this, but not sure which states... Check with the dept. of

Health and Human Services in your area. For Gracie, she'd qualify for care and

the issue of income and assets applies to her, not to us. That is, she cannot

have more than $2000 of her own assets.

Anyway... I digress... you don't want a lesson in how it works here... you

need help where you live. However, maybe my explanation will trigger new

questions or ideas for ways to get help... I don't know.

I just get so frustrated when I hear how hard we all struggle to find out the

best ways to take care of our children... and ourselves. Because, let's face

it, we can't take care of them if we can't take care of ourselves.

Please feel free to email me privately if you want more info... I would love

to help you be a " squeakier wheel " in any way I can.

Kristi

[Guest guest]

when our daughter erika came home from spending her first 5 mos of life in

the NICU, she had a trach, on a vent and a feeding tube. Our insurance said

60 days of nursing was it as well. We fought it, appealed it and won. We had

to keep saying and proving " medically necessary. We ended up having 24 hrs

a day for many years, eventually cut us to 16/day.

erika no longer has a trach but sleep apena and is on BIPAP and a feeding

tube. I still have night nursing and a nurse for school. i dont know whati do

without the night nurse. There are some nights when we dont have someone, we

take turns sleeping on the floor. is on pulse oximeter at night, but

i still sleep with one eye open.

FIGHT, FIGHT. Get your doctors to right letters, and state the medical

reasons why you need a nurse, list their responsiblities. Your doctor/nursing

agency should also devleope a care plan stating the medical reasons. You

should file External appeals, this will go to an outside person from your

insurance agency. Send the appeal certified mail. It is not easy, but the

insurance

companies expect you to take it laying down and hope you wont fight back.

cathie, mom to erika 10 yr CHARGEr

[Guest guest]

Amy.

I am not sure if you have one already but with your commercial insurance

policy you are able to obtain a case manager. It is usually a nurse and she can

be the go between. If you do not have one yet call the insurance company and

request one. They will need to ask some questions and you get assigned one

rather quickly...or at least it seemed quick for me...

I too struggled with the insurance company...I was able to tell the case

manager that unless they authorized a special car seat I would be requesting 10

ambulance transfers to go to doctor appointments. It was cheaper to approve the

car seat and she got it approved and overnighted ...So the insurance may view

the increase in nursing a smart business move....it is very costly to pay for a

child's long term stay in the hospital.

Some times you have to play hard ball...it is an all comsuming task....

But I will tell you I qualified for nursing and due to the lack of skilled

pediatric nurses we never got the nursing care needed.

Good luck

Ellen mom to 8

[Guest guest]

Amy-

said the thinks I was thinking of. When Aubrie was a baby, she had a

feeding tube but no trach. She was on a 2-hour feeding schedule- pump

breast milk, put it down the tube, watch her for vomiting, clean equipment,

start again... never mind diapers, bathing, etc. In a short time, I was

ready to lose it.

Our Dept Of Human Services waiver requires a limit on a family's assets --no

income limit. So we eventually liquidated our stock portfolio (which was

small but new to us as my father had passed away several years before) and

put it all into the mortgage. Now we had no assets and qualified.

What got that ball rolling was a chance telephone conversation with someone

in DHS at the state office who understood my plight. She put in a

legislative referral on our file. There was no legislator in fact, but she

made a note on the file that we had been referred by one. That was all it

took to get the ball rolling. It still took time and we had to jump thru

their financial hoops, but it finally happened.

And I did have to basically say that without help we'd have to hospitalize

her longterm. I would not have really wanted to do that, but that was the

reality of our situation. We could not physically keep up with her care. I

think the drs and service coordinators on our case helped with letter

writing also.

Keep being the squeaky wheel. You never know when the right person will

hear your story and be able to actually do something. If you haven't talked

to your legislators, do. And talk to them repeatedly.

Have you considered going to the media? What is happening to your family is

something that the public and legislators need to know about. As they make

public policy decisions, they don't realize the reality of what it does to

families.

In fact, Congress will be voting on cutting Medicaid and Medicare spending

tomorrow. If you think you don't have services now, imagine if funds were

cut. Stories like yours could help stop those cuts.

I don't know how the insurance company can think that 60 days of care will

do it for you. I think ours offered one day a week or month. Crazy.

I'm so sorry we don't have a quick fix for you. Keep telling people what is

happening. Let anyone who is willing to help assist you in whatever you can

think of. Let them do your laundry, groceries, cleaning, etc so you can

sleep and care for Ben. Don't feel guilty for a second. You have time only

for Ben right now. You need help with everything else. If the state won't

fund that help, then reach out to the people around you and let them help.

In the meantime, keep fussing til someone hears you and things change. If

you feel comfortable, go to your pediatrician and discuss a hospitalization

so you can get relief, he can get the care he needs, and the insurance co

can reconsider the real options.

I'll be thinking of you.

Michele W

Aubrie's mom 8 yrs

[Guest guest]

Michele,

My boss kept telling me to call our legislator and at the time I could not

figure out what on earth for.

Now I know that having a legislator on your side when appealing insurance

decisions really does make a difference!

Kim

> Amy-

> said the thinks I was thinking of. When Aubrie was a baby, she had a

> feeding tube but no trach. She was on a 2-hour feeding schedule- pump

> breast milk, put it down the tube, watch her for vomiting, clean equipment,

> start again... never mind diapers, bathing, etc. In a short time, I was

> ready to lose it.

>

> Our Dept Of Human Services waiver requires a limit on a family's assets --no

> income limit. So we eventually liquidated our stock portfolio (which was

> small but new to us as my father had passed away several years before) and

> put it all into the mortgage. Now we had no assets and qualified.

>

> What got that ball rolling was a chance telephone conversation with someone

> in DHS at the state office who understood my plight. She put in a

> legislative referral on our file. There was no legislator in fact, but she

> made a note on the file that we had been referred by one. That was all it

> took to get the ball rolling. It still took time and we had to jump thru

> their financial hoops, but it finally happened.

>

> And I did have to basically say that without help we'd have to hospitalize

> her longterm. I would not have really wanted to do that, but that was the

> reality of our situation. We could not physically keep up with her care. I

> think the drs and service coordinators on our case helped with letter

> writing also.

>

> Keep being the squeaky wheel. You never know when the right person will

> hear your story and be able to actually do something. If you haven't talked

> to your legislators, do. And talk to them repeatedly.

>

> Have you considered going to the media? What is happening to your family is

> something that the public and legislators need to know about. As they make

> public policy decisions, they don't realize the reality of what it does to

> families.

>

> In fact, Congress will be voting on cutting Medicaid and Medicare spending

> tomorrow. If you think you don't have services now, imagine if funds were

> cut. Stories like yours could help stop those cuts.

>

> I don't know how the insurance company can think that 60 days of care will

> do it for you. I think ours offered one day a week or month. Crazy.

>

> I'm so sorry we don't have a quick fix for you. Keep telling people what is

> happening. Let anyone who is willing to help assist you in whatever you can

> think of. Let them do your laundry, groceries, cleaning, etc so you can

> sleep and care for Ben. Don't feel guilty for a second. You have time only

> for Ben right now. You need help with everything else. If the state won't

> fund that help, then reach out to the people around you and let them help.

> In the meantime, keep fussing til someone hears you and things change. If

> you feel comfortable, go to your pediatrician and discuss a hospitalization

> so you can get relief, he can get the care he needs, and the insurance co

> can reconsider the real options.

>

> I'll be thinking of you.

> Michele W

> Aubrie's mom 8 yrs

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Amy-

I found the link for an insurance complaint form for Ohio. I didn't take

the time to look at it cuz I'm a bit overwhelmed here right now too. But I

wonder if that is one step you can take.

http://www.ohioinsurance.gov/forms/scripts/formsdownload.asp?formid=0

Michele W

Aubrie's mom

[Guest guest]

Amy:

You definitely need a case manager from the insurance company! We fought

and fought, and the case manager didn't get it until she had to find someone

for trach care for an adult. Said that was very difficult. Then add to

that fact that an infant/child can't really tell you they need suctioning or

that their trach is plugging, can't bathe, feed, or change their own diaper,

etc. When the case manager brought this to the " higher ups " at the

insurance company, we got approved. The other thing is to discuss with a

benefits coordinator at your husband's company. That is what they are paid

for. Insurance reps don't know all the different coverages - much as they

won't admit it - and can miss what is available.

When was 3 months old and trached, g-tube fed, etc., the insurance

company rep said we only qualified for 4 hours nursing a day. The company

our insurance was under was self-insured but managed through an insurance

company. The reps kept detailing benefits based on the " standard " coverage

their company provided. It took going to the benefits coordinator at the

employer to get things clarified with insurance. We ended up with 12 hours

per day/7 days per week. What a huge difference! It was the difference in

keeping Rick and I healthy enough to provide the care for those hours when

we didn't have nursing. We were able to continue that coverage for 3 years

until the trach was successfully removed. (At one point they tried to state

it was " custodial " care, and we had to fight again to keep the nursing

hours. But the docs came to bat and asked, since when did that status change

from things as they were previously? was still unable to suction or

change her own trach, or do her own tube feeds, etc.)

Her pulmonologist initially wrote a letter stating that without home nursing

care she would be back in the hospital, as when Mom & Dad got worn down and

unable to provide care, 's health would fail. The choice was to

provide nurses, or provide hospital coverage for 2 parents with exhaustion

and one child with major medical complications. This doctor stated in no

uncertain terms he would place in a hospital or respiratory rehab

setting if home nursing was not provided. Guess they weighed the costs and

determined the home nursing was a better deal!

Get that case manager! Be sure to ask questions too. The first one we had

was recently graduated from nursing school, with only the " field experience "

as required to gain her degree. She had no real world nursing experience to

draw on, and had no clue what it took to have a trached infant at home. (At

one point she asked about how did when we went shopping!! I said,

you've got to be kidding! We had to be the first appointment of the day at

any doctor visits because of oxygen/battery limitations on the portable

equipment needed when she was not on the regular equipment at home.

Shopping?!? didn't see the outside of 2 rooms in our house for a

long time. Other than going to appointments, she was pretty much tethered

to her CPAP and oxygen. That finally got the point across to this woman.

Shortly thereafter, we got a new case manager: An older nurse with 24 years

in the field, and 4 years at the insurance company.

Friends in CHARGE,

Marilyn Ogan

Mom of (13 yrs, CHARGE+ JRA)

Mom of Ken (16 yrs, Asperger's)

Wife of Rick

oganm@...

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

aarusso03

Sent: Tuesday, January 31, 2006 4:22 PM

To: CHARGE

Subject: We are desperate - Has anyone else had a baby with a

trach?

My son Ben is a 6 month old CHARGEr. He has a trach and feeding tube,

among many other things. Our insurance company is only covering 60 days

of 8 hour shifts a year. We are on every waiver list on the planet -

all with over two years of a wait. If you have been there or know of

anyone in our same situation - I would love to hear from you. We don't

know what to do once our insurance days are up - Ben needs 24 hour

supervision... we can't even sleep when he does in fear he might plug

off, or have his trach come off.

We have already fought insurance, fought waivers, and nothing has

changed. I've left my job to take care of Ben, but my husband has to

work and we can't do it by ourselves. Family has been helping as much

as possible, but I can't ask them to move in with us and take a 4 hour

shift EVERY DAY! Please help... any suggestions or options would be

appreciated.

Amy Russo

PS We live in Ohio.

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

i could killl them book me a ticket and i will LOL so stupid hugs ellen

>

> Amy:

>

> You definitely need a case manager from the insurance company! We fought

> and fought, and the case manager didn't get it until she had to find

> someone

> for trach care for an adult. Said that was very difficult. Then add to

> that fact that an infant/child can't really tell you they need suctioning

> or

> that their trach is plugging, can't bathe, feed, or change their own

> diaper,

> etc. When the case manager brought this to the " higher ups " at the

> insurance company, we got approved. The other thing is to discuss with a

> benefits coordinator at your husband's company. That is what they are

> paid

> for. Insurance reps don't know all the different coverages - much as they

> won't admit it - and can miss what is available.

>

>

>

> When was 3 months old and trached, g-tube fed, etc., the insurance

> company rep said we only qualified for 4 hours nursing a day. The company

> our insurance was under was self-insured but managed through an insurance

> company. The reps kept detailing benefits based on the " standard "

> coverage

> their company provided. It took going to the benefits coordinator at the

> employer to get things clarified with insurance. We ended up with 12

> hours

> per day/7 days per week. What a huge difference! It was the difference

> in

> keeping Rick and I healthy enough to provide the care for those hours when

> we didn't have nursing. We were able to continue that coverage for 3

> years

> until the trach was successfully removed. (At one point they tried to

> state

> it was " custodial " care, and we had to fight again to keep the nursing

> hours. But the docs came to bat and asked, since when did that status

> change

> from things as they were previously? was still unable to suction

> or

> change her own trach, or do her own tube feeds, etc.)

>

>

>

> Her pulmonologist initially wrote a letter stating that without home

> nursing

> care she would be back in the hospital, as when Mom & Dad got worn down

> and

> unable to provide care, 's health would fail. The choice was to

> provide nurses, or provide hospital coverage for 2 parents with exhaustion

> and one child with major medical complications. This doctor stated in no

> uncertain terms he would place in a hospital or respiratory rehab

> setting if home nursing was not provided. Guess they weighed the costs

> and

> determined the home nursing was a better deal!

>

>

>

> Get that case manager! Be sure to ask questions too. The first one we

> had

> was recently graduated from nursing school, with only the " field

> experience "

> as required to gain her degree. She had no real world nursing experience

> to

> draw on, and had no clue what it took to have a trached infant at

> home. (At

> one point she asked about how did when we went shopping!! I said,

> you've got to be kidding! We had to be the first appointment of the day

> at

> any doctor visits because of oxygen/battery limitations on the portable

> equipment needed when she was not on the regular equipment at home.

> Shopping?!? didn't see the outside of 2 rooms in our house for a

> long time. Other than going to appointments, she was pretty much tethered

> to her CPAP and oxygen. That finally got the point across to this woman.

> Shortly thereafter, we got a new case manager: An older nurse with 24

> years

> in the field, and 4 years at the insurance company.

>

>

>

> Friends in CHARGE,

>

> Marilyn Ogan

>

> Mom of (13 yrs, CHARGE+ JRA)

>

> Mom of Ken (16 yrs, Asperger's)

>

> Wife of Rick

>

> oganm@...

>

> _____

>

> From: CHARGE [mailto:CHARGE ] On Behalf Of

> aarusso03

> Sent: Tuesday, January 31, 2006 4:22 PM

> To: CHARGE

> Subject: We are desperate - Has anyone else had a baby with a

> trach?

>

>

>

> My son Ben is a 6 month old CHARGEr. He has a trach and feeding tube,

> among many other things. Our insurance company is only covering 60 days

> of 8 hour shifts a year. We are on every waiver list on the planet -

> all with over two years of a wait. If you have been there or know of

> anyone in our same situation - I would love to hear from you. We don't

> know what to do once our insurance days are up - Ben needs 24 hour

> supervision... we can't even sleep when he does in fear he might plug

> off, or have his trach come off.

>

> We have already fought insurance, fought waivers, and nothing has

> changed. I've left my job to take care of Ben, but my husband has to

> work and we can't do it by ourselves. Family has been helping as much

> as possible, but I can't ask them to move in with us and take a 4 hour

> shift EVERY DAY! Please help... any suggestions or options would be

> appreciated.

>

> Amy Russo

> PS We live in Ohio.

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

>

>

>

>

[Guest guest]

Amy,

If U go to _www.thearc.org_ (http://www.thearc.org) there is a manual there

covering disability rights in Ohio,

and other information.

[Guest guest]

Amy,

Are you hooked up with EI services through Help Me Grow yet? Sometimes the EI

specialists are very knowledgeable about the different avenues for services,

appealing insurance on things like nursing care, etc. The first EI specialist

we had was great at things like this. She is now the director of Warren County

Help Me Grow. And are you hooked up with Warren County Family Services? They

should also assign you a case manager who can help with things like this.

Have you applied for BCMH yet? We always got turned down for it because we

had two incomes, but you might qualify since just your husband is working now.

I know a lot of families who get help from them, although I'm not sure what all

they provide.

If you'd like the numbers for Joni (Director of Help Me Grow) or Mize

(our case manager for Family Services), let me know. They might be able to

suggest some options for you and help with an insurance appeal.

---------------------------------

What are the most popular cars? Find out at Yahoo! Autos

[Guest guest]

Yup, ellen and I will be partners in crime. We will put thouse silly

people in their place and make them relize that there is multiple

imparments. Look at the WHOLE person not just each problem

individualy. Kill the rest who wont take the time to understand that

simple little fact of life for CHARGErs.

Chantelle

> >

> > Amy:

> >

[Guest guest]

Hey Jody,

your email actualy gave me some suggestions. I am going to tell my doc

that why i need to be on odsp. She is a prick. she wont fill the dang

form out and i only have a few days left to mail it. Im going to go to

her office tomorrow and tel lher if she dosnt compelat it i may just

end up needing to be inpatiant to deal with my behaviours. Without

meds i cant work. Im just going to go to her office tomorrow and make

her fill that out. Dang it.

Chey